Sharing My Experience

Every three weeks I go to the infusion center for my Herceptin. 

What is Herceptin? 

Herceptin (chemical name: trastuzumab) is a HER2 inhibitor targeted therapy. Herceptin works against HER2-positive breast cancers by blocking the ability of the cancer cells to receive chemical signals that tell the cells to grow. Breastcancer.org.

I don't actually get Herceptin, I get another drug called Kanjinti that is chemically similar and achieves the same result...and they have a copay assistance program which is a huge help financially. 

There is no denying that I am weird, crazy, insane...whatever, but I really do look forward to going to infusions. 

Even when I was getting chemo I looked forward to being there. The staff, nurses and doctors are some of the nicest poeple on the face of the earth. The aftermath of chemo was tough but the people are amazing. 

In anticipation of losing my hair, friends sent me fun hats to wear and I have continued to wear hats or outfits throughout the additional treatments. 

The staff has told me that get excited when they see my name on the roster! They even talk about what they think I'm going to do.

The infusion I had in March was the Friday before St. Patrick's day. I decided it was close enough to roll with that as a theme. . 

I found a really fun headband that blinked and a shirt that said, "Who Needs Luck, I have Charm"

As I was getting into my car I caught my reflection in the rearview mirror, giggled and thought, "I love my life." 

And I do. I really do. 

Looking back at this past year one would questions my sanity. 

Seriously, it's been one shit sandwich after another but...I'm alive! 

I have so much to be grateful for! 

I have a loving hubby, two amazing boys, two incredible businesses, an amazing business partner, and incredible assistant and wonderful, loving friends. I'm on the downhill side of becoming a cancer survivor, I've met some of the most amazing people you can imagine and I have been able to make people laugh in the midst of the turmoil that is cancer treatment. 

Yes, I am blessed. 

I get to make people laugh. 

I look forward to those laughs. 

Working on outfits and themes gave me a purpose during chemo. I was able to focus on how I could be funny instead of feeling miserable. 

And now, I can be a guide for others who are starting on the path. 

I don't have answers but I do have experience that I can share. 

I recently went to see a friend who is going through chemo for ovarian cancer. Her chemo is a different cocktail than mine was but the acid reflux and nausea that it induces is the same. She had been eating Tums to no avail. I brought her a baggie of Gaviscon chewables and told her to take Nexium (after she'd checked with a pharmacist) because it had worked wonders on me. 

Guess what? It works for her too! The Gaviscon is a game changer. That stuff is a miracle in a chewable! 

We sat and talked a just bitched about the ravages of chemo on our bodies and the irritation of chemo brain - it's real people!

I was able to commiserate as I'd "been there done that" already and my experience was close enough to offer hope that this too shall pass and she can get on with life. 

I also gave her a super fun shirt. When she pulled it out of the little gift baggy I had stuffed it into she laughed. 

Making her laugh made my heart happy! 

Two Down, Ten To Go!

I've had two chemo treatments so far. 

Honestly, the chemo treatments themselves aren't bad. In fact, it's pretty relaxing!

Having the port installed was not relaxing despite the drugs they gave me. 

They put me under conscious sedation which means that I was still sort of awake but didn't care. 

The problem is that lidocaine and novacaine wear off super fast in my body. The doctor had to give me extra lidocaine half way through the procedure. 

I did warn him that this was going to be necessary but I don't think he took me as seriously as he should have. 

After the port was installed I was sent back to the pre-op/recovery area where my wonderful friend Julie waited for me. 

Julie is an amazing person who is a retired oncology nurse. She answers all my questions and keeps my anxiety riddle brain at ease. 

Julie and I met a couple of years ago when she was assigned to my Mother's of Preschoolers (Mops) group as our Mentor Mom.  

Mops is an amazing Christian based program that brings moms together to help one another through, what is undoubtedly, one of the hardest times of life. Although the boys are going into third grade now, I have been a member of Mops since before they were one year old.  

Mops has been my lifeline for years! 

I thought I was going to go insane from the isolation, when Covid ravaged the coutry and forced us all into quarantine. To help keep what little sanity I have, Julie started coming to my house once a week with a bag chair, a cup of coffee and a blanket so that I could have company. 

We would sit out in the sunshine on the lawn and just talk.

We have continued to meet weekly and Julie was one of the first people I called when I was diagnosed. 

Surgery, chemo, port installations, etc. are really scary when you have no idea what is going on. 

Julie is the calm in my storm these days. 

I can message her with the dumbest stuff and she never criticizes me. She just answers my questions and makes me feel normal. Not an easy task, I can assure you!

Because Glenn was going to be taking me to chemo that week, I asked if Julie could bring me to get the port put in. I'm so grateful that she was there. She understands things that neither my hubby nor I do. 

The port hurt like hell! 

It was so bad that night, I almost vomited while trying to eat dinner. 

So, of course, I called Julie! 

It really wasn't the actual port that hurt. What was bothering me was the area on my neck where they accessed my artery and then pressure dressed it with a folded up gauze pad and tegaderm (clear plastic medical tape). The gause pad was putting so much pressure on my neck that I could feel it when I swallowed and it hurt to move. 

They closed the area with surgical glue so I didn't even need the pressure dressing. We decided that removing that part would be ok. 

I washed my hands, got out the Neosporin band-aids and got to work. 

After the gauze had been removed and replaced with the bandaid most of the pain in my neck went away. 

The purple thing and the catheter are under my skin. In the picture above, the stuff on the top is the needle and catheter through which the drugs flow. 

The port is on my chest, the catheter goes into my carotid artery. 

The port is fantastic! They can draw blood through it and also give the drugs through it. No more poking my arm everytime they need blood. 

The reason everything is taped up in that picture is that after they finished installing the port they left the needle in (accessed) so that I didn't have to endure a needle stick the next day when I started the chemo. 

While I am very grateful to have it, the first few days of having the port in were terrible. According to the doctor I had "higher than normal bruising/swelling" which was most likely contributing to the discomfort. 

Evidently I'm special! 

The neck is a pretty tight place and a little swelling goes a long way. 

Exaserbating things was the fact that the Tegaderm ate my skin...literally. My skin came off when they removed the tape and the tape has to be removed to remove the needle. 

By the following Friday (Chemo day 2) almost all of the swelling was down, most of the bruising was gone and Julie reminded me to use my Emla cream prior to going in for my infusion.   

Emla is a prescription lidocaine cream. It is heaven in a tube! 

I squirt a blob onto my skin on the top of the port then apply plastic wrap. The plastic keeps the cream from getting absorbed into a bandage or gause pad and numbs the area. It worked like a charm! I didn't even feel the needle when she put it into the port! 

As I mentioned earlier, chemo is a pretty chill event. The nurses are super nice! Each patient has their own TV, Wifi is free and there is a volunteer who gets us beverages and snacks.  The pumps unplug and have a four hour battery runtime which allows us to walk around if we want to and we are free to go to the bathroom whenever we need. 

Most people (myself included) picture chemo with lots of vomiting and horror stories. While vomiting does happen for some patients, it doesn't happen there. It usually takes a couple days for the drugs to work their way into the system. 

People don't vomit the moment the drugs start flowing. 

Most of us sleep or watch TV. Some people can even work and bring laptops. 

I sleep :) 

The order of my infusion is: Steroids, Benedryl, Taxol, Herceptin. 

The steroids give me great energy for the next couple of days but it doesn't kick in right away. The Benadryl is precautionary to keep me from having a reaction to the Taxol. Taxol is the chemo drug and the Herceptin is the Her2 blocker. From when I arrive to when I leave it's approximately four hours. 

Usually I fall asleep once the Taxol is started and sleep until the Herceptin is almost finished. 

Glenn drives me to chemo then goes to Wawa and picks up lunch. 

We eat lunch together then I pass out. 

Last week he ran errands while I was sleeping. 

By 3-4pm on Friday I am feeling pretty good and by evening the steroids have me FLYING!!! 

I can clean the house, fold the laundry, finish cakes, bring home the bacon and fry it up in a pan! LOL! 

Unfortunately, sleeping on Friday nights is also an issue. 

That issue is usually gone by 2pm on Sunday. 

Once the steroids wear off, I crash. 

Mondays are tough because my energy is low and the chemo fatigue sets in. 

 I have dubbed Tuesdays "Taxol Tuesday" as that's when the tummy issues start. 

Taxol Tuesday's Breakfast of Champions is coffee, toast, Immodium and Zofran. 

The Taxol creates issues bad enough that I need to take 1/2 and immodium every day but I increase that to a full one on Monday and Tuesday. 

I am blessed that the Zofran is doing it's job and I have not thrown up...yet. 

Each week is different so we'll see. 

The other charming side effect is acid reflux. 

OMGness it's horrible! 

Nexium makes 20 mg mini-capsules. I take one in the morning and one in the evening to combat the heartburn. (Just FYI - if you are undergoing chemo don't add anything unless you check with a pharmacist to make sure you won't have a bad reaction with the chemo drugs). 

I still have my hair. They keep telling me that it's going to fall out. I was going to get it cut then thought, "Why waste the money?" So, it's an unruly mop! 

As I've mentioned previously, I have a love/hate relationship with my hair. Mostly hate. It's been the one constant that has driven me crazy for most of my life. 

I'm ready to not have to deal with it for a while.  

I decided to go to church on Sunday since the mask mandates have been fully lifted. While getting ready I took and shower and had to shave my legs. 

I was so annoyed! 

All I could think of was, "Can we hurry up the hairloss thing?"

A Fighting Chance

My niece got married last weekend. She was supposed to have gotten married in 2020 but the world shut down on their original wedding date!  

Two reschedules later, they are finally husband and wife! 

It was an unbelievable wedding with lots of laughs, a few tears, great speeches and...

I danced!!!

It's been ages since I danced. 

Like, REALLY danced. 

I led a freaking conga line through a ballroom! 

My feet still hurt and so does my chest (a little) but...

I. Don't. Care!!! 

Chemo looms on my horizon. 

I overdid it knowing that it was going to be my last opportunity to do so for a while. 

Unfortunatley, I spent Sunday in bed because the armpit where they removed the nodes hurt like hell. 

The worst part was that we had to postpone our Father's Day canoe trip. Canoe trips are a family favorite and I was really looking forward to it. But, between the pain and not getting any sleep because of the pain it was just not a good idea. 

Fortunately, I am the type of person who does actually listen to my body and backs off when things get rough. 

I didn't used to be that person. 

I have overdone it physically many, many times in my life and have the knees, ankles and arthritis to prove it. 

But I have matured, well, actually my body has matured and no longer allows me to be a dumbass who doesn't know when to stop. 

However, this does not matter to some people who feel it necessary to give me useless advice. 

If one more person tells me to take care of myself I may throat punch them. 

Aaaaaaaaaaaaargh!!!! 

Yes, I know it's important. 

I'm not a moron. 

I'm also a business owner, business partner, boss, manager, marketing director, mom, wife, homeowner, chief cook and bottle washer. 

The hats I wear are many. 

Self-care is a hot cup of coffee and a game of on-line cribbage. 

While people mean well, they need to respect where a person is in their life. Unsolicited advice right now is rarely welcome. 

I appreciate the people who ask if I need help, not the people who tell me I should get some.

Don't tell me to relax, breathe or calm down. 

When I am wound up and having a crappy day I need people who can commiserate or just listen. Having someone say, "I have no idea how you feel but I'm here if you need to vent" means the world to me. 

I appreciate their honesty and their willingness to be with me in the moment. 

They don't offer advice, tell me how to feel or try to fix anything. They just listen! 

Speaking of fixing things...

The engine in the 2017 Ford escape has been replaced. Ford covered most of the parts. While we are very grateful to Ford for their assistance, we still should not have had to replace an engine at 84,400 miles! 

It runs well and everything is good except the passenger side windshield wiper now hits the "A" pillar and makes a tapping sound every time it swipes. 

So annoying! 

I only noticed because, after going through the carwash and cleaning the inside of the car for two hours, it rained. 

Never fails! 

Today I had an echocardiogram and had more lab work done. I'll be happy when the port is installed and I can stop being a pin cushion! 

The port will be installed on Thursday morning. Chemo starts Friday and will be every week for 12 weeks. 

Reactions to the drugs are an unknown as I fortunately, have never had them before. 

The unknowns bother me more than anything else. 

I might be sick, but I might not. 

I might lose my hair, but I might not. 

I might have neuropathy, but I might not. 

I try to not spend a lot of time thinking about that stuff. 

It's a massive rabbit hole of "what ifs" that I don't want to go down. Instead, I choose to bury myself in the technical stuff. 

I like to understand the treatments and the research/reasoning behind them. 

I will be receiving Taxol and Herceptin. 

"Taxol, originally extracted from the bark of the Pacific yew tree, is one of the mostly commonly used drugs against solid tumors, and is a front-line drug for treating ovarian and advanced breast cancer. The drug is known to bind to microtubules and essentially freeze them in place, which prevents them from separating the chromosomes when a cell divides. This kills dividing cells, in particular cancer cells, which are known for rapid proliferation." Berkeley News

"Herceptin works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals. By blocking the signals, Herceptin can slow or stop the growth of the breast cancer. Herceptin is an example of an immune targeted therapy. In addition to blocking HER2 receptors, Herceptin can also help fight breast cancer by alerting the immune system to destroy cancer cells onto which it is attached." Breastcancer.org

Although they do not know which side effect I will succumb to, they do know that these two drugs can give me many, many more years to come. 

According to the National Cancer Institute, $590 million dollars is invested in breast cancer research annually. 

I am am grateful for each an everyone of those dollars for myself, my sister, my mother, my aunt, countless friends and any other woman who will hear that they have breast cancer. 

Because of the preventative/diagnostic measures that have come from that reseach, we have a fighting chance today. 

While it is not a sorority I ever wanted to pledge, I am proud to be a pink ribbon sister with some of the most amazing warriors on the planet. 

Robotic Box Checker

I thought I was going to get my drains out last week.

I was wrong. 

Unbeknownst to me, the total drainage per side needs to be below 30 cc per day for two days consecutively. Not knowing this, I arrived at the surgeon's office only to be informed, rather snippily by the nurse, that I was not going to be having them removed that day, the next day or probably not until the following week.

When I questioned why she said that I was draining more than 30cc's for the day. When I replied that I didn't know that she said, "I asked you when you called this morning." 

Technically she did. However, she did not ask, "Are you under 30cc's for the day?" What she asked was, "Are you under 30cc's?" I replied that when I emptied the drain that morning it was less than 20cc's. 

She got nippy. I got snippy right back and said, "You'll have to excuse me. This is the first time I've had my boobs cut off so I have no idea how things are supposed to work."

Then I had a massive meltdown... and the nurse got a lot nicer.

But, I still spent the day in bed crying. I was devastated. 

The drains hurt. 

I mentioned previously that the drain on the right was killing me. It was super painful and as it healed it got worse. Add suction pain to the drain pain and I was completely miserable. Seriously, it felt like my skin was being sucked into my chest. 

Sleeping has been nearly impossible which has contributed to my deteriorating emotional state and increased depression. Two antidepressants a day did little to help me. 

Don't get me wrong, I could and did, push through most days but all it would take was a pin to drop and I was off and blubbering again. 

I'm not the worst at asking for help but I'm not the best either. 

Fortunately for us, people have been better at helping than I have been at asking. 

Dinner has been delivered every other night by an army of friends and neighbors. The kids have had transportation provided and extra play time at friend's houses so I could rest and my staff has been UNBELIEVABLE! 

Honestly, I couldn't ask for better employees! I want to go into detail about these women but I will save that for another day and give them the full post they deserve. 

Fast forward to this week and my drains were removed on Wednesday...finally. 

We arrived at the surgeon's office and checked in. 

The nurse (same one) came around the corner and told Glenn that he couldn't come in. I responded with another  massive meltdown...like snot bubble, hyperventilate meltdown. 

Persistent pain is exhausting. I was worn out and clearly incapable of controlling my emotions.

Fortunately she relented, let him come with me and my drains were removed. 

The left one was uncomfortable but the right (the one that's hurt the whole time) hurt like hell! The nurse had to stop halfway through removing it so I could take a break. 

She also removed the steri-strips from the surgery and it looks so good! The incision is still a little wrinkly but it's flattening out a little each day. 

I did apologize for being such a nut job in the waiting room. She told me it was ok and went on to explain that since she was in the room alone she was afraid of having my husband pass out (something that has happened with spouses before) and she would not be able to take care of him and pull the drains at the same time. 

She told me I didn't need to apologize but I did again anyway. I do feel badly. 

Without the drains in, both my demeaner and my range of motion are improving. I'm not crying at everything and I even helped on some of the cakes this week! 

Maybe I'll even be able to fold the massive pile of clean laundry that has accumulated in the house. 

Yippee. <snark>

Glenn washes and dries but doesn't fold. 

After lunch we met with my oncologist, Dr. Tedeschi at Penn Medicine. 

Before the doctor came in a technician came to take my weight, temp, oxygen level etc. then began asking the barrage of general questions. The best one was, "Are you experiencing pain?" Glenn snorted, I laughed and said, "I just had my drains removed, so today is probably not the day to ask." She looked at me like a deer in headlights and asked, "So you have pain?" I replied, "Yeah, yeah I have pain." 

Then she asked...

Wait for it...

...

"Where?"

"Where they cut my boobs off!" I snarked. 

Really?!

C'mon people! I understand that these are trained individuals but seriously, can we bring back common sense?! They are not just trained but over-trained an incapable or not allowed to think for themselves. 

It was like speaking with a robotic box-checker. 

The Oncologist was a different story! I really like her. She is smart, funny, compassionate and has common sense! 

She didn't brush my concerns aside about having two businesses and needing to be as available as possible. When discussing the chemo schedule and possible side effects she made the suggestion of Fridays for infusion. This way if I have a negative reaction to the chemo my down days would be Sunday and Monday when the store is closed anyway and I wouldn't have to worry about finding someone to cover my hours. If it goes well and I feel up to it, I can have the infusion in the morning and then work in the afternoon! 

If I don't have any reaction to the chemo, I can switch my infusion days to Tuesdays in Kennett Square vs Friday's in West Chester. The difference in drive time is about 25 minutes each direction so being able to move to Kennett Square would be fantastic! 

Dr. Tedeschi did say that I would probably lose my hair. I replied, "Well, a summer without shaving can't be all bad right?!" She looked me in the eyes, smiled and said, "I like you. We're going to get along really well." 

I know for some losing their hair can be very traumatic. Truth be told? I'm sort of looking forward to not having hair. I've had a life-long love/hate relationship with the stuff. It is extremely frizzy. I once even had a hairdresser refer to it as fuzzy! Not having to deal with it at all might be a welcomed change for a few months. 

Now onto the chemo regimen....

I will be having Taxol + Herceptin infused via a port once a week for 12 weeks and then just the Herceptin once every three weeks for the remainder of the year. 

Many people are familiar with the chemo cocktail of ACTH. This stands for chemotherapy medicines Adriamycin, Cytoxan (chemical name: cyclophosphamide), and Taxotere (chemical name: docetaxel), plus Herceptin.

ACT is much more harsh than just the Taxol and comes with so many more side effects. I am feeling very lucky. Studies have shown that, in patients with clear nodes and a mass less than 2 cm, there is no benefit in receiving the ACT with H and that Taxol plus Herceptin is just as effective. Had the mass been larger or the nodes hadn't been clear my treatment would be the ACTH. 

Chemo will start on June 25. 

When we walked through the door after the appointments on Wednesday the boys greated us with, "Did they take them out?" I pulled my shirt up to show them that the tubes were indeed gone. They both cheered enthusiastically and for the first time in almost two weeks I got to fully hug my kids. 

Something I hope to be doing for many, many, many years to come.